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Chalkie wrote: ↑

Thu Apr 05, 2018 4:20 am

raisedfist wrote: ↑

Tue Apr 03, 2018 12:03 pm

Chalkie wrote:
So should the pressures have been raised? Feeling lost here.

The technician just whacked the pressure up, with no discussion, and sent me packing with a new mask and a ticking off for admitting to using the forums.

I think you're better off starting from scratch and using the forums help to get you some better settings. Either the technician doesn't know what they are doing, or they are just not interested in helping you. Or both.

Since you have the BiPAP S/T, I would switch it to Spontaneous "S" therapy mode, and set your pressures at something like IPAP 8 and EPAP 6 and see what happens. You should get less mask leaks, and with the lower pressures, especially less pressure support, there is less chance of the pressures themselves causing centrals. If you still have a ton of centrals, we can trial switching back to S/T mode with a low backup rate, and see if that helps. If that doesn't help the centrals, then probably off to ASV land you will need to go.

All sounds eminently sensible. However, with the NHS they don't want you messing around with the settings.

What I COULD do is use the backup machine they have given me (and probably forgotten I have) and learn how to tweak the setting on that.

I reckon another sleep study is called for tbh. I agree I need to start from scratch.

rick blaine wrote: ↑

Thu Apr 05, 2018 11:44 am

Hi Chalkie,

1. The private medicine sector in the UK is roughly 11 per cent of all patient consultations, and is mostly covered by the three or four big private medical insurance companies. And 'covered' means 'you pay the insurance company, and they pay the doctors and private sector hospitals'.

And they probably wouldn't take you on at this point, Chalkie, because you have a clearly-established pre-existing condition.

If you paid out of your own pocket that would indeed be expensive. When I last checked five years ago, the cost of an ASV from Philips Respironics was £4300. It's probably more now. And then there would be a fee - say, £200 - for each doctor consultation.

2. As to doctors in the NHS not being very welcoming if and when you 'come back' - I've talked to a few - I even have one in the family - and their reaction is usually based on the fact that all too often they get landed with the 'clean-up' when things have gone wrong in some private treatment. That, and case histories are often not kept in good order.

But any irritation expressed is really intended for, and directed at, the private doctors - and not at the patient.

3. Anyway, since you're not going down that road - can I add to the post by Jas_williams with this:

I have found that once the medical staff treating me at my NHS sleep-medicine department 'got' that I know what I'm doing and that I do things for a reason - a sensible reason - then they have been, and are, ok with that.

The place that they are coming from is that they have 'a duty of care' towards you - not to harm, not to let harm come to you, and not to let you harm yourself. And that duty is not just something that gets installed at medical school, it is also laid down - in several places - in UK law.

If you let the medical people treating you know you understand their position - including how busy they are - you might get a different response. You could even start the next conversation about changed settings by saying (something like), "I know you worry that I might come to harm, but ... " - and then give your reasons. See what happens if you do that.